Satisfaction with care among patients with non-metastatic breast cancer: development and first steps of validation of the REPERES-60 questionnaire

<p>Abstract</p> <p>Background</p> <p>The care itinerary for cancer involves difficulties that occur in several different areas, whether in the diagnostic procedures, in surgery, or in adjuvant treatment. The aim of this work was to obtain a valid instrument measuring satisfaction among patients with breast cancer and exploring their care itinerary overall.</p> <p>Methods</p> <p><it>Development phase</it>: Patient focus groups were implemented in two French regions in order to identify areas of satisfaction in relation to the different phases of care provision in breast cancer. On the basis of the literature and the themes and wordings derived from the focus groups, the patients identified several areas of satisfaction, which they found to be partially covered in an American satisfaction measure that has been validated in the French general population (the Consumer Satisfaction Survey in its French version, CSS-VF, 39 items). The patient focus groups suggested adaptation of certain dimensions of this instrument to the potential care providers (37 items) and produced 45 new items in six areas.</p> <p><it>Validation phase</it>: Using a large sample of patients (cohort of 820 women with invasive non-metastatic breast cancer) approached one month after treatment, this phase selected items that were comprehensible (non-response rate < 10%), non-redundant (r < 0.80) and reproducible (test-retest conducted on a sub-sample of 166 patients). The dimensions were identified by factor analysis on the selected items. Divergent and discriminant validity were assessed (relationships with quality of life questionnaire, comparisons between extreme groups).</p> <p>Results</p> <p>Results were in favour of not inserting additional broken-down items into the CSS-VF and retaining 21 new items. The factor analysis found the initial structure of the CSS-VF (39 items in 9 dimensions) and the 21 new items divide up into four dimensions (listening abilities and information provided by doctors, organisation and follow-up of medical care provision, psychological support, material environment). No redundancy was observed between new items and CSS-VF items. Internal consistency was high. Divergent and discriminant validity were satisfactory.</p> <p>Conclusion</p> <p>Adding four new dimensions to the CSS-VF yielded a valid 60-item instrument for assessment of care provided in breast cancer. These promising results now require further investigations of its responsiveness and its robustness in other linguistic, cultural and healthcare settings.</p

Determinants of participation in colonoscopic screening by siblings of colorectal cancer patients in France

International audienceBACKGROUND: Targeted colonosocopic screening is recommended for first-degree relatives of colorectal cancer patients diagnosed before the age of 60 and offers the possibility of reducing morbidity and mortality, but participation remains too low. The objective of this study was to determine in a French population the factors that affect siblings' participation in screening, notably those relating to the individuals, their medical care, their family and their social network. METHODS: A cross sectional survey was conducted in siblings of index patients having undergone surgery for colorectal cancer between 1999 and 2002 in two French counties. Siblings were contacted during 2007 and 2008 through the index patient. The factors affecting participation in colonoscopic screening were studied by logistic regression taking into account family cluster effect. RESULTS: 172 siblings of 74 index cases were included. The declared rate of undergoing at least one colonoscopy among siblings was 66%; 95%CI 59-73%. Five variables were independently associated with colonoscopic screening: perceiving fewer barriers to screening (OR = 3.2; 95%CI 1.2-8.5), having received the recommendation to undergo screening from a physician (OR = 4.9; 1.7-13.7), perceiving centres practising colonoscopy as more accessible (OR = 3.2, 1.3-7.8), having discussed screening with all siblings (OR = 3.9; 1.6-9.6) and being a member of an association (OR = 2.6; 1.0-6.6). CONCLUSIONS: The factors independently associated with participation in CRC screening by an individual at increased risk belonged to each of four dimensions relating to his individual psychosocial characteristics, to his relationship with a physician, within the family and social environment. The relevance of these results to clinical practice may help to improve compliance to recommendations in a global preventive strategy including all stages of the information pathway from the physician to the index patient and his relatives

Prevention of colorectal cancer in high-risk patients : from observational to interventional research

Le but de ce travail est d'élaborer et d'évaluer une intervention de santé publique, visant à augmenter la participation au dépistage ciblé par coloscopie de la population à risque plus élevé de cancer colorectal (CCR) en raison d'antécédents familiaux en faisant appel à une méthodologie qui repose sur 3 étapes successives :1- une étude observationnelle : l'identification des déterminants associés à la réalisation de la coloscopie chez la fratrie d'un patient atteint de CCR avant 60 ans. (3 publications) 2- une expérimentation contrôlée, visant à tester l'efficacité d'une intervention personnalisée, par une infirmière de prévention, sur la participation au dépistage des fratries d'un patient atteint de CCR ou d'adénome avant 60 ans. L'intervention personnalisée qui a intégré non seulement les fratries mais également les cas index et les médecins a fait la preuve d'une efficacité jusque là jamais atteinte dans les études menées antérieurement aux USA, qui ciblaient uniquement les fratries. Cette analyse épidémiologique a été enrichie par des analyses linguistiques et sociologiques afin de mieux comprendre l'impact de cette intervention téléphonique. (1 publication)3- Cependant, les contraintes propres à la conduite d’un essai interventionnel randomisé, si elles garantissent un niveau de preuve élevé du bénéfice de l’intervention, ont aussi pour conséquence un caractère expérimental ; cet essai ne pourra être généralisé à l'identique. Une étude de recherche interventionnelle en santé des populations a été soumise à l'appel à projets 2016 de l'INCa.The aim of this work was to develop and evaluate a public health intervention to increase participation in targeted screening colonoscopy for high-risk population of colorectal cancer (CRC) because of family history using a methodology based on three successive stages:1- an observational study to identify the determinants associated with the achievement of colonoscopy among siblings of a patient with CRC before age 60. (3 publications)2- a controlled experiment to test the effectiveness of a personalized intervention by a preventive nurse on the participation in screening of siblings of a patient with CRC or adenoma before age 60. The personalized intervention that included not only siblings but also the index case, specialists and general practitioners has demonstrated efficiency never achieved previously in earlier studies in the USA, which targeted only siblings. This epidemiological analysis was enriched by crossed linguistic and sociological analyses to better understand the impact of telephone interventions. (1 publication)3- However, the constraints on the conduct of a randomized interventional trial, if they guarantee a high level of evidence of the benefit of the intervention, also have the effect of an experimental nature that cannot be generalized. An original research study on population health intervention has been developed and submitted to the 2016 INCa call for projects

Répétition d'accident à l'adolescence : étude prospective de l'Echelle d'évaluation des Circonstances de l'Accident et du Risque de Récidive

National audienc

Le travail émotionnel à l’épreuve du cancer colorectal. Entre expérience de la maladie et prévention du risque familial

International audienc

Regards croisés sur l’efficacité d’une intervention personnalisée dans le dépistage ciblé du cancer colorectal

International audienc

L’expérience de la maladie chronique : éducation thérapeutique, insertion, socialisation

International audienc

Circulation familiale des savoirs sur le risque élevé de cancer colorectal

International audienceL’objectif de cet article est d’analyser les modalités de transmission et de circulation familiales des recommandations sur le risque élevé du cancer colorectal (CCR), ainsi que les enjeux de cette prévention. L’article s’appuie sur les matériaux de deux enquêtes : un dépistage ciblé du CCR basé sur un schéma d’essai randomisé mené dans l’ex-Poitou-Charentes entre 2010 et 2013 ; des monographies familiales autour de l’expérience du CCR. Il s’agit de comprendre d’un côté comment les personnes soignées réalisent (ou non) la prévention familiale ; de l’autre, comment les apparenté-e-s peuvent (ou non) se constituer comme acteur-rice-s et/ou cibles de cette prévention. Les enjeux étudiés portent sur les dilemmes éthiques et familiaux des soigné-e-s. La circulation de la recommandation renvoie à la configuration et à la qualité des relations dans la famille, au genre du travail domestique de santé, aux parcours de soin et aux histoires familiales de maladie qui structurent les savoirs profanes sur le CCR et sa prévention